Church Bells and Rollercoasters!

I woke up just now to music. I thought I had left the TV on in my hospital room, but no, it was the church right outside my window! It's Easter after all. I lay here for a while listening. Organ blaring, and I'm sure if I was in a different mood this 6am wake up call would have been less welcomed, but this morning I liked it. It was really beautiful and uplifting. Now there are people singing.....hmm I have never really heard of this being outside of the church?!!! But I get such a good view, why not?!

So I am uplifted!

As far as my progression and how I am doing in this place.....day 21, with my previous 14...that would make it 35 days....ouch....well we're not talking about getting me out of here. No time soon anyways. My doctor and I had a chat about it, and she has no plan now, just to keep moving forward. The good news about that is that I would not leave right now if they told me too. The thought has terrified me over the past few weeks. You know you're sick when the hospital becomes like home. When you DON'T want to leave. Well no one here is kicking me out, so we're keeping everything as is. Plugging along to may be get me somewhat better and more comfortable. That's our goal she said. That's all we're going to be able to achieve, being hopeful that this is not my new norm. This goal does not change anything for tx. It just means being more comfortable and safe waiting.

My Easter weekend was full of ups and downs. I went home on Friday to do a few things, ended up taking a bath (which was like heaven!!!) and then passed out on my bed and slept. I have never slept like that in my life. Just passed right out. I cranked my oxygen (to a comfortable and safe level) and just slept. In my own bed. It was so missed, I cannot tell you. The things that we take for granted every day. Our beds. A bath or shower. I miss those things and keep reminding myself not to ever take them for granted again. Never.

Oh, and before Friday, on Thursday night, my mom and I took a walk to a local restaurant for dinner. They let me out between IV cycles and we walked the 500 m or so to get some food. Even with oxygen I had the worst walk. Miserable. Could not breathe, and was all foggy and well, just miserable, and it was a short walk! It was not even worth driving to since walking to the car and then from the car to the restaurant might have been at least the same distance! But I was so miserable! It just reminded me of the shape I was in. At the restaurant I had completely lost my appetite and could not eat a thing. I tried but I was sick and tired and just wanted to go back to bed. What a life huh?

Now came yesterday, Saturday. I did not want to go home, since I saw no point of going all that way so that I could sleep. Too much energy wasted. So my mom and I went to an art store (so that I could get a few things, I'll write about that another time) and Starbucks to enjoy some out-time. We got those things done without a hitch, and it was only about halfway through the day that I realized how much better I was feeling. Walking was easy (still on oxygen but nothing like Thursday) and I even sat at Starbucks without my nasal prongs and still felt good. I was amazed. I have not felt like that in ages. I mean a year or year and a half perhaps. What?!?! Granted, I realize this is ON oxygen (I used to be off it) but still it was like night and day to any day I have had for a long long time.

When I got back to the room, I checked my SAT's, and as I was still standing I was at 98%?! HUH?! What? For the past month or so, I have been SATing about 93% on oxygen. This time on the same amount, and after walking these were the numbers? I was baffled. How fast do things turn. It's remarkable. I am excited to see how the next days, and weeks in here go. As we keep being aggressive with the drugs and the therapy. Something has obviously turned.

Now I want everyone to understand that this does not mean anything for transplant. Of course if all of a sudden I were to get off oxygen all together, and my lung function would jump at least 10%, well then we'd have something to think about. Right now all this means is that I might get myself off IV's eventually and actually get to go home. That's all I want right now. Of course waiting for new lungs at home, without IV and horrible bouts of infection will be nice, but it's a lot to ask for I know. Small victories I say. This is a victory.

I think the organ and singing have finally stopped. Back to hearing the roar of downtown traffic. Eww.

So that's that. Ups and downs. Ups and downs. I don't know about you but I am getting nauseous riding this rollercoaster!!